In the summer of last year, my eldest son, aged 5.5, attended an Extended School Year (ESY) program in New Jersey. This initiative caters to children like my son, who faces challenges such as type 1 diabetes, autism, ADHD, and various learning disabilities. The primary goal of the ESY program is to maintain skill continuity and prevent regression during the lengthy summer break. Unlike traditional summer school, ESY does not introduce new concepts; rather, it reinforces previously acquired skills while ensuring that therapeutic services, including speech and occupational therapy, remain accessible. For many families, particularly those with overextended caregivers, this program serves as a vital support system.
During this year’s Individualized Education Program (IEP) meeting, my son’s dedicated team conveyed that he no longer qualified for the ESY program. Changes made by the school district and my son’s progress in the previous academic year led them to conclude that attending ESY could hinder his development; they recommended enrolling him in a conventional camp with neurotypical peers, or possibly a diabetes-focused camp. This outcome is generally seen as a positive development, indicative of progress, yet I found myself grappling with conflicting emotions.
In addition to the ESY update, it has been determined that my son will transition to a more mainstream educational setting in the upcoming school year. Specifically, his participation in general education has increased from less than 40% to a range of 40-70% of his school day. He will continue his special education curriculum for reading and writing, but will also engage with a typical first-grade class for subjects like math and science. While these transitions are often viewed as milestones, I find myself questioning why I am not more jubilant about these changes.
I am acutely aware of my son’s abilities; he may possess a higher IQ than mine, and the way he perceives the world is truly remarkable. He is likely underestimated rather than overestimated, especially academically. Thus, I am confident he will succeed in first grade. However, my concerns lie within the social realm. Without the structure of a summer program, how can I ensure he receives the necessary social engagement while still allowing our family to enjoy summer? Furthermore, what will the integration into a regular classroom setting look like for him?
Living in this ambiguous space is challenging. The constant uncertainty and anxiety can be overwhelming. My son’s multiple special needs interact in complex ways, impacting his learning style and daily functioning. Decisions regarding his care often require careful consideration of whether to prioritize his diabetes management or his autism support. The challenge lies in discerning when to encourage him to push beyond his limits and when to provide support; he is perceived as “high functioning,” yet this label can be misleading.
We often encounter well-meaning individuals who struggle to grasp the complexities of my son’s experience. For example, comments such as, “He must be able to manage his diabetes independently by now,” overlook the reality of his needs. The truth is, we do not force him to handle diabetes care on his own at this stage. He will face this challenge throughout his life, and for now, it is appropriate for adults to alleviate his burden.
Similarly, remarks like, “He interacts so well, is he really autistic?” fail to capture the full picture. My son’s social skills can sometimes mask his underlying challenges, leading to assumptions that he will simply “grow out of it.” In reality, he may only become adept at concealing his behaviors over time.
I worry most about the inevitable social challenges he will face as he grows. When he encounters bullying, will he even recognize it as such? Often, it may come from someone he considers a friend, as he may struggle to identify deceptive behavior. This concern is exacerbated by societal attitudes; for instance, I once overheard a parent refer to a special education class as the “retard class,” a term that should have been left in the past. If such language persists among adults, it is likely that children will emulate it.
Despite these concerns, I am immensely proud of my son’s achievements over the past year. This summer, we are focusing on a balance of academic review, reading, and engaging with other children in our community. We aim to prepare him for interactions with neurotypical peers while remaining vigilant in protecting him from potential harm. Although navigating the grey areas of his development is daunting, it is a journey filled with love and growth.
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Summary:
This article explores the complexities of raising a child on the autism spectrum, particularly in the context of transitioning to mainstream education and managing multiple special needs. The author reflects on the challenges of social integration and parental concerns about bullying and societal perceptions, all while celebrating their child’s progress and the importance of providing proper support.